Musings of a Marfan Mom

One of my favorite things about summer time is going to all the fairs. My hometown in Ohio is known for its simple street fair over the 4th of July weekend. Later on in the season there’s a county fair not far away that’s THE place to showcase your 4H projects. And of course we can’t forget the Ohio State Fair!

My brother’s blues band, Aces High, played the home town fair this weekend and I think it made me a little nostalgic (not to mention a smidge homesick) for fairs, so I looked around for one. Lucky for me, my friend Stacey was up for exploring and we rounded up all the kids last week and went. Menininho loved the petting zoo so much, he and I went again with Mark.

Here are some of the highlights!

Can't really tell from this pic, but he did love petting all the animals.

Wallaby!

Learning the finer points of firetrucks

The National Marfan Foundation’s 26th annual conference is this week! Today’s post is dedicated to some last minute points about it, for those going and staying home alike.

Conference is going to be on Twitter!
If you’re going to conference and you plan to tweet: Please be sure to use the hashtag #nmfconf at the end of all of your conference related tweets. This will enable other people to see conference tweets from all users at once. For example, “Wow, I just got great advice for my dural ectasia at the conf. clinic! #nmfconf”

If you want to follow conference from home: 1) Put the hashtag “#nmfconf” in the search bar on the right hand side of your Twitter homepage and/or 2) Follow @NMF_Marfan for general session tweets and me, @MarfMom, for teen program tweets.

If you’re coming to conference, I’d love to meet you! Working with the teens means I’m not around for most of the adult activities, but I’ll be at Friday evening’s welcome event and Sunday’s closing luncheon. Come say hi! I’ll be the tall one. Haha, just a little Marf humor there. (You know…’cause we’re known for being really tall…)

Finally, my friend Debbie found out that there are ways to get tax deductions for attending conference! You can find out more information at this link, but basically transportation to conference and some lodging can be tax deductible. Keep track of those receipts!

Due to conference, I won’t be posting a Friday Favorites post this week and Monday’s post will feature a very special guest blogger.

For those of you coming to Houston this week, safe travels! For those of you at home, hope to see you on Twitter and check back here next week for conference recaps and all the latest research info!